Living Life One Extension at a Time - Extension One Part 3

One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.

Purpose?

I'm going to backtrack just a bit, in December 2020 I had a feeling God was asking me, "Now that you have this cancer, what are you going to do with it?". Not what are you going to do about it, but with it. That is when I decided my purpose with whatever time I may have left was to work to prevent as many men as possible from ending up being initially diagnosed stage four. To get them checked so that early detection would save their life. Early detection results in a greater than 99% five year survival. Find it how I did and you end with a 30% five year survival. My life changed at this point, I had a purpose in my life bigger than me.

How do You Fulfill Such a Purpose?

I was already pretty comfortable telling my story. I would lay in bed at night and think about talking in front of large groups of people. At first it was men, they need to know. Covid quickly stopped all dreams of being able to do this. I kept thinking that surely this would be over soon and I could get back to trying to find groups to talk to. Around the first of September of 2020 I decided to form the Mohawk Mission, a social media based platform to spread awareness about prostate cancer since I couldn't see groups. I open a Facebook page, Instagram page and started a website. It was a meager at best attempt to get the word out but I had started a path that would grow.

Why Men?

I don't recall when this thought first hit me. How many men would I be able to find that want to listen to a guy talk about their prostate and cancer. Let's just say that I wouldn't have attended! I was the guy that didn't care for doctors, there's nothing wrong with me, I'm okay, I feel fine. Didn't know anything about prostate cancer before diagnosis. Never had a PSA test. I knew I wasn't the only man like that out there, and probably a majority men were the same. After all, we're men! No, this needed a different approach. Women are accustomed to seeing doctors from a young age and are generally the Health CEO's of their families. I needed to reach women, they could help get men to the doctors. So my thoughts changed and I started targeting women more.

500 Women

You never know what direction you may be lead. Spring of this year (2022) I had an appointment at the neurological institute for a problem I was having with vertigo. We talked with the nurse practitioner that saw me at the end of the appointment about my cancer. She told me about a group of women that gather every summer for a day of fun and fundraising. I did some research and found the woman that created this event. I would learn that they raise over $20,000 a year for a prostate cancer nonprofit and have several hundred women attend who do a float trip down a local river. I was asked to talk at this event with over 500 woman attending. This would be the pinnacle of my speaking engagements, getting to joke about the hot flashes and the table with stirrups, but then challenging them to get their men checked for prostate cancer. This will be a day I will never forget.

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Living Life One Extension at a Time - Extension One Part 2

One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.

Time for My Second Radiation Treatment

I believe it was in September 2019 that my radiation oncologist told me he would like to radiate my prostate since it was my largest tumor in my body. The preparations needed for this radiation provided some entertainment after the fact. They needed to put two gold markers into my prostate so that they could be used to target the tumor precisely. I also had SpaceOar Gel put in. This is a gel that separates the prostate from the rectum to help minimize radiation exposure to the rectum. This was all done in one appointment. I went to my urology clinic and was taken to an exam room so I could get naked and put on one of those lovely gowns. You know, the kind your butt hangs out of. Then they took me into the procedure room, I had no idea what to expect. When I walked in, there was a table to my right, with stirrups on it! My first thought was I was in the wrong room, not pregnant, what the hell was this for. Well, get up on the table, feet into the stirrups and slide your butt all the way to the end of table. There went all my modesty! And what did Beth say again, now you know what it's like. If that wasn't enough, I had to have a CT simulation also before the start of radiation. The rule when you do this and all your radiation treatments to the prostate is you have to have a full bladder. On the day of the simulation I must have over studied. My bladder was at the burst level by the time we got to the clinic. My lead radiation tech comes out and gets me and on the way back she tells me the radiation oncologist needs to talk to me. I'm thinking let's just get this over! The doctor tells me, oh by the way they will be giving me a catheter. I've never had a catheter and now a couple of young ladies will be doing my first. I'm also thinking I'm not responsible for what happens when you tap my bladder, it's at redline pressure. Well they only went up to the bladder so they could put a dye inside the urethra so it could be seen in the scan. The scan didn't take long and I'm ready to go to the bathroom. Wait, don't move we need to give you your tattoos. What, I was in the Navy for seven years and never got one. They gave me three little x's, one on each side and one on top. These would be used to initially line me up in the radiation machine. Now you can go to the bathroom. The treatments were uneventful, 5 days a week for four weeks. My last treatment was the day before Halloween. The lead tech enjoyed decorating for Halloween as you can see by the radiation machine becoming a monster for Halloween.

The Realization and the Goal

During my prostate radiation I had a discussion with the nurse practitioner that took care of all the advanced cancer patients. I asked what to expect in my future, she told me that the hormone therapy generally works for 18-24 months and then I would need go onto something else. This is when I realized that this is no sprint, it's a marathon. I decided I needed a goal, something I've never done before and something that would be hard to achieve. Four weeks after diagnosis there was a 5k run/walk held at my urology clinic. Beth and I decided to attend and so did Bonnie, our oldest daughter. Bonnie and I did the one mile walk. I decided to do some fundraising for the event and my radiology team asked me to be on their team. Surprisingly I ended up being the top individual fundraiser. This brings me to the goal. May 30th 2020 would be the next run/walk and I decided I would RUN it. Now I've never been a runner, never liked running and thought everyone that did it was nuts. But I thought what the hell I'm a 58 year old, out of shape, stage four prostate cancer patient, this should be easy.

Let the Training Begin and the First 5k

I decided to start training for the 5k in December. I found an app that fit me perfectly, it was "Couch Potato to 5k". That described my situation pretty well. This app has you enter data about yourself to estimate how much time it should take you to reach a 5k and customize your training schedule. It said eight weeks for me. I thought I would be conservative and give myself three months to complete it and then I would have three months to improve my time. That thought completely fell through! It took me two weeks to just get through week one. By the end of December I felt like I wasn't getting any where with the app so I changed to walking on the treadmill everyday. At first it was less than two miles at a medium pace. Eventually I made the 5k distance at this pace. Then I started slowly increasing the pace. I spent 30 out of 31 day in January on the treadmill. To cut to the chase, it took me all six months to get to being able to run a 5k. As you know Covid hit and run/walk did not occur but on May 30th my daughter Becky and her husband came up to our little town and the three of us did a 5k around town. This was my first full 5k run, my goal was to do it in 37 minutes. I made it happen in 36:59!

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The PC Tribe - One Year Later

Starting the Group

One year ago I made the final decision to start a Facebook group just for men dealing with prostate cancer. This group is different from what the Mohawk Mission's main purpose of prostate cancer awareness is. It was our first venture in providing support to men. I always thought there are plenty of support groups available, I need to help men before they get diagnosed. Then I saw the importance of men supporting men in Man Up to Cancer's The Howling Place. I felt that the prostate cancer community needed its own group doing the same thing. The easy part was forming the group but then I needed to let men know it was there. Fortunately as a member of the Howling Place which had several PC men in it, I was allowed to post about the new group and members started coming in. I posted where ever I thought I could and more members came. I didn't want men to leave the other groups since they all provide help in different ways, but just add to where they could find support.

The Nurturing

Well now I had a group but how do I get the communications flowing between the men. Many of these men had never been in a men's only group and I didn't know if they would open up. I was used to telling my story and sharing my journey, so I started being as open as I could. Others soon followed suit and slowly the conversations started happening. Once in a while I needed to share even more. As time went on more guys felt safe and comfortable talking about their journey. And now the conversations flow daily.

The Losses

We have a lost a few men this past year. The ones I know are Robert "Beau" Jackson and Joseph Murphy. Joe was on the zooms in Man Up from early on and we got to know each other. He joined our group right after is was formed. Beau started his own group called the Prostate Cancer Prayer and Support Group. He was a man of tremendous faith. We became very close friends and he asked me to escort him him, which I did proudly. We still miss these guys but we always hope we can be there in men's time of greatest need if nothing more than to just listen and talk. We love you guys and miss you.

The Reward

I knew it was working when men would comment that they finally found a place with men going through the same thing they are. Every comment that thanked me for starting this confirms this was needed and fills my heart with the love felt across the group. I often say this group is not about me or the other admins, it is about the men in the group. They make the group work, they make the group great and they make everyone feel welcome and supported. Without all of you the group would not exist. It has been a real blessing for me to see all of this come about in one year. November 23rd s the PC Tribe's one year anniversary and we are 500+ strong across ten different countries! I've talked with men from the other side of the world. I'm not sure I could even imagine that at the start. Many of you help the mission's PC awareness by sharing postcards, magnets and arm bands along with wearing the mission apparel. Together we can make a difference. I love all of you guys!

#prostatecancer

#prostatecancersupport

#prostatecancerblog

#mohawkmission